Wednesday, August 22, 2012

Days 192 - 203

Kennedy's portrait for the Cure Search slide show

Look mom, no water wings!
Summer is almost over and Kennedy is going to start kindergarten next week.  When she was first diagnosed, that didn’t even seem possible.  We met with the school principal, nurse, social worker, kindergarten teacher and gym teacher last week and we have a plan to keep Kennedy safe.

Grandma, Auntie Julie and Kennedy
Arizona day out shopping
We got back from Arizona on Sunday; the kids had a blast.  Kennedy swam for 9 hours straight!  Julie treated the kids to a lot of fun, including crafts at Make Meaning where Kennedy decorated a birthday cake (including edible spray paint) for her cousin Ali and Maddox made soap for Ali’s birthday.  We did some shopping and a lot of eating.  We got to spend some much-needed time with grandma, auntie Julie and the cousins.  Although we had a blast, it is great to be home.  We aren’t the most organized family and I think our clutter was making Auntie crazy (that along with our dramatic son and non-eating daughter).  The flight to Arizona was LOONNGGG.  The flight was delayed for nearly 4 hours but otherwise, uneventful.  Kennedy wore a mask on the plane and they let us board first so we could wipe down the seat and her area.  Unfortunately, the trip back wasn’t as great.  Kennedy threw-up in the car on the way to the airport (the poor driver), in the airport and then again on the plane 2-3 times.  We are still not sure why.  We did give her some Zofran on the plane, which seemed to work.

At Clinic - love Maddox's choice of toys!
Today we had clinic.  Kennedy threw-up on the way to clinic, which was bad since I was driving and Maddox was in the back seat with K.  I felt bad there was nothing I could do but hand her the barf bag Gary gave us month’s back.  The doctors examined her ears to make sure she didn’t have an ear infection causing the nausea  but nothing was there.  Her counts were at 800 so the assumption is that she just has a tummy bug.  Being completely honest, the nausea and vomiting was so reminiscent of our return from Mexico, although we didn’t say it, Gene and I both thought the cancer could have been back but it was not something we gave much merit to.  She’s just a kid with a tummy bug, thank GOD!

Cancer?  What Cancer?
By the time we left clinic all was good but Kennedy got sick again on the way to lunch so we just headed home.  After some Zofran and some chill-time at home, I took Kennedy and Maddox to Extreme Trampoline, yes that’s how we roll – from puking to jumping.  Cancer, what cancer?  Our kid is normal and that’s how we try to live.

A little boy was diagnosed with brain cancer today in clinic.  As we sat on the other side of the curtain, I heard the pain and agony of the family being told the next steps.  Mom, dad, grandma and grandpa and Jordan (he’s 2), were there.  They couldn’t get the IV in and after several attempts and screams, I heard them explaining that a port would make things better.  Both Kennedy and I were in tears and Maddox asked to leave, it’s amazing how that feeling of just finding out returns.  As far as cancer goes, we are lucky with ALL Leukemia.  Please pray for Jordan and his wonderful family.  They need as many prayers as they can get right now. 

Lastly, thank you to all who have donated to the CureSearch walk.  We are kicking some butt in the war against childhood cancer and the money contributed will help find a cure for some tough forms of the disease.   We were asked to take a picture of Kennedy for a slide show for the event that expressed her journey through cancer.  My word was "hope", Kennedy's was "Never Give Up". If you haven’t done so already, please login to our page and walk with us on September 8.

Saturday, August 11, 2012

Days 184 191

At Big Time Rush
It was a great week for Kennedy.  Her moods were still all over the place for the first few days after she stopped steroids but slowly she has turned back into our sweet little angel.  She had a great time at the Big Time Rush concert last Saturday and due to the crazy weather that night, her Bear Hug lasted from 4pm – 12pm and included a power outage and an acoustic performance by the band when we were rushed back stage to stay out of the torrential downpour.  It was quite the experience and we are grateful to Bear Necessities Pediatric Cancer Foundation for their program that allowed Miss. K to do this.

At Museum of Science and Industry

This past week I took the kids to the Museum of Science and Industry and dad hung out with Kennedy and took her to Pirate’s Cove and Miniature Golfing.  Both kids have been through a lot and it is nice to be able to spend special time with them.

At pirates Cove
On a very somber note, we said good-bye to a friend this week.  Last year we got to meet an amazing family that were neighbors to us at our new trailer.  Dave Rivera was diagnosed with liver cancer just one month after Kennedy was diagnosed and he passed away yesterday.  We will miss him dearly.

There is no cure for cancer but we are working on finding one by supporting CureSearch.  September 8, 2012, our entire family is participating in the 2012 Chicago CureSearch Walk to raise funds for children's cancer research. Every day, 36 children are diagnosed with children's cancer – 7 of these children will not survive; cancer is the leading cause of death by disease in children. Although the cure rate is now 78%, up from 40% over the last 20 years, it is not good enough. Our goal is a 100% cure rate and we need the assistance from our family and friends to help make this possible. 

To participate in the September 8th walk or to make a donation, visit our team web page at

We would love if you would walk with us, kids are welcome too!!!

Friday, August 3, 2012

Days 178- 183

Molly and K's hands
Thank goodness this round of steroids is done.  This week was just awful and roid rage was extreme.  It was difficult to leave the house without Kennedy having a meltdown backed by extreme frustration and spotty pain.  Leaving for work or anywhere was a challenge.  We noticed that she was easily distracted from the crabbiness and the pain by playing so we used it to our advantage.  Thanks to some last minute help on Tuesday and Wednesday, we all survived the week.

Tuesday morning, I texted Molly and she thankfully came over to play with Kennedy.  The 20 calls I received on Monday were reduced to about 10 on Tuesday.  Wednesday, Stephanie came over with all of the kids and Kennedy spent the afternoon painting everyone’s faces.   I am so thankful to both Molly and Steph, I’m not sure we would have made it through the week with the help!

K painting Kaitlyn's face
Thursday was clinic and her counts were through the roof due to the steroids (something like 16,000).  Dad took both kids to clinic because Maddox wanted to go and he thought it would be good to keep K distracted.  This clinic visit was not the best.  The nurses had to access her port twice, the first poke didn’t result in a blood draw and after trying to move the needle around a bit, they de-accessed and re-accessed her.  There was a lot of screaming and Kennedy was extremely upset.  It is not fair that Kennedy and all of the kids at clinic need to go through so much, so young.  Gene was emotionally drained by the end of yesterday, obviously traumatized by dual poke and Kennedy’s extreme mood swings.

Maddox and K at clinic
Maddox wanted to dictate a portion of the blog regarding clinic, so here it is…. “First we got there, then Kennedy was sitting in the big chair.  Then, we got a little hungry when we got into the new room and daddy gave us some chips.  Then we watched Home Alone and then she got the needle stuck into her chest two times.” 

K - today...happy, finally!
Today I put up the backyard water park and Steph came over with the kids again and they all played.  Kennedy is still extremely emotional but I can tell it’s already getting better by the smiles. 

Tomorrow is Kennedy’s Bear Necessities “Bear Hug”.  We are all headed to the Big Time Rush concert and Kennedy gets to meet the band.  She is very excited. 

We meet with the school next week to discuss Kennedy’s kindergarten special-needs.  So far the school has been extremely receptive and I really like the new principal.   A letter will be sent out to Kennedy’s class at the start of the school year to hopefully help incoming students understand why K is bald and the need for all of the sanitizer.